Chairperson's Update - Ending of Life Ethics

Medical Experts and National Organizations Endorse Special Safeguards to Protect Vulnerable Canadians in Right-to-Die Legislation

On March 15, 2016, many of us read a CBC report that a Manitoba court had given permission for a Manitoban to be provided medical aid in dying, also referred to as assisted suicide, and then the next day the media covered an Ontario case.  Earlier this month, courts in Alberta and Ontario granted constitutional exemptions.  In the province of Quebec, people have been receiving medical aid in dying since December 2015.  You may be wondering how people concerned about the effect of assisted suicide on the disability community can take action.  So, this edition of the Chairperson's Update shares some background information about CCD's recent work addressing assisted suicide and a sample letter for MPs that encourages them to include in assisted suicide legislation safeguards, which would protect people made vulnerable.

In February 2015, in the Carter case, the Supreme Court set aside the Criminal Code's total ban on assisted suicide.  The Court gave the Government a year to develop new legislation to govern how assisted suicide would be made available in Canada.  The lengthy federal election delayed this process and in January 2016 the Government of Canada went back to the Supreme Court and asked for more time to develop legislation.  This February, the Supreme Court granted a four month delay.  In the same decision, the Supreme Court also ruled that during the four month extension people seeking an assisted suicide could apply to a court for a constitutional exemption to the existing law which prohibits assisted suicide. The Quebec National Assembly in June 2014, passed Bill 52 and it came into effect in on December 10, 2015. 

Since the Carter decision in 2015, disability rights organizations have been working to raise awareness about the need for safeguards which would offer protection to people who are made vulnerable and may be pressured to accept an assisted death.  CCD's Ending of Life Ethics Committee has been presenting a disability rights perspective on how to preserve the human rights of people with disabilities in an environment where assisted suicide is available. 

CCD submitted briefs to both Canadian Provincial/Territorial Expert Advisory Group on Physician-Assisted Dying and the External Panel for a Legislative Response to Carter v. Canada.  In these submissions CCD proposed principles and procedural safeguards to govern assisted suicide.  On October 29, 2015 in Winnipeg, Rhonda Wiebe, Co-Chairperson of CCD's Ending of Life Ethics Committee (EOLEC), Jim Derksen, EOLEC member, and James Hicks, CCD National Coordinator, met with the External Panel.

On January 11, 2016, Rhonda Wiebe, Dean Richert, James Hicks and David Baker, legal counsel, along with the Canadian Association for Community Living (CACL), attended the Supreme Court of Canada when the Government of Canada argued for an extension to the deadline for having legislation governing assisted suicide in place.  CCD supported the Government's position. 

On January 28, 2016, Rhonda Wiebe and Dean Richert appeared before the Special Joint Committee on Physician Assisted Dying.  They advised the Committee on how Parliament can fulfill the Supreme Court of Canada's requirement to protect persons who are vulnerable and may be induced to commit suicide at a time of weakness, while allowing physician-assisted death and voluntary euthanasia for those who meet stringent criteria in a scrupulously monitored and enforced system.  To address socially created vulnerability, CCD called for a vulnerability and capacity assessment process that would determine if a person meets the criteria established in Carter. CCD is urging that decisions about assisted suicide not be made by a doctor behind closed doors in an exclusively medical context.  Instead, CCD called for the establishment of a nationally constituted Review Board, chaired by a federally appointed Judge.  Such a regime would ensure a national assisted suicide regime with Canada-wide standards, built upon the direction given in Carter. CCD argued against a patchwork of provincial and territorial standards.  The Review Board would evaluate the vulnerability assessment, the assessment of two physicians and the patient's application and make the ultimate decision of whether an assisted suicide request would be granted.

On February 25, 2016, CCD shared its concerns regarding the recommendations of the Special Joint Committee on Physician-Assisted Dying.  CCD expressed the concern that the Committee’s permissive approach would put vulnerable people at risk. Their recommendations exceed guidance from the Supreme Court and they were out of step with the provisions of the UN Convention on the Rights of Persons with Disabilities. 

On Tuesday, March 1, 2016, disability rights and other organizations from across Canada called on Parliament to adopt a series of evidence-based safeguards designed to protect the lives of vulnerable Canadians.  James Hicks represented CCD at the Press Conference where the Standard was launched.

The Vulnerable Persons Standard has been developed by leading Canadian physicians, health professionals, lawyers, ethicists, public policy experts and national representative organizations of people with disabilities.  EOLEC members Jim Derksen, Rhonda Wiebe and Dean Richert were involved in the development of the standard.  A full list of the almost 30 advisers to the Standard and the organizations which have endorsed the Standard can be obtained at www.vps-npv.ca.

The Standard will ensure that policies designed to help Canadians requesting assistance from physicians to end their life do not jeopardize the lives of vulnerable persons who may be subject to coercion and abuse.

"The federal government needs to exercise wisdom in striking a balance between equitable access and appropriate safeguards for people whose physical, emotional, cognitive or social vulnerability may make them more susceptible to suicide," says Dr. Harvey Max Chochinov, Canada Research Chair in Palliative Care and Former Chair of the 'Federal External Panel' on Options for a Legislative Response to Carter v Canada, and an adviser to the Standard.

"The decision to die should not become a default choice for vulnerable Canadians. We need safeguards to ensure that palliative care and relevant support options have been exhausted," says Dr. Balfour Mount, Professor and Emeritus Flanders Chair of Palliative Medicine, McGill University, and an adviser to the Standard.

The Standards requires that:

1. Legislation concerning physician-assisted death must not perpetuate disadvantage or contribute to social vulnerability.
2. The patient face end-of-life conditions with no chance of improvement and has enduring and intolerable suffering as a result of a grievous and irremediable medical condition.
3. Voluntary and capable request and consent by the patient are required, including immediately prior to death. This prohibits the use of advance directives for physician-assisted death.
4. An assessment of suffering and vulnerability that may arise from psychosocial or nonmedical conditions and circumstance.
5. Arms-length authorization be obtained from a judge or independent body with expertise in the fields of health care, ethics and law.

"The recommendations contained in the Joint Parliamentary report on medically-assisted dying should give all Canadians pause. They would remove virtually all restrictions on accessing physician-assisted death and significantly exceed the guidance provided by Canada's Supreme Court," says Tony Dolan, Chair of the Council of Canadians with Disabilities (CCD), one of the organizations supporting the Standard. 

"This debate highlights uneven access to quality palliative services in Canada. As we recognize the right to physician-assisted death, we must also redouble our efforts to ensure that Canadians have access to adequate palliative care options and other supports for patients and caregivers," says Dr. Susan MacDonald of the Canadian Society of Palliative Care Physicians.

"As the Supreme Court of Canada recognized, permitting physician-assisted death presents inherent risks for vulnerable people. This should be of deep concern to all Canadians. While we believe a complete ban remains the only way to eliminate such risks, the Standard contains important measures to help minimize them, consistent with a 'carefully-designed system imposing stringent limits' as contemplated by the Court," says Derek Ross, Executive Director of the Christian Legal Fellowship. 

Joy Bacon, President of the Canadian Association for Community Living, another supporting organization, says "It should be possible for Canadians to access these services without also jeopardizing the lives of vulnerable persons. I hope the Standard will help the federal government to strike a better balance between these important rights."

The Vulnerable Persons Standard is available at www.vps-npv.ca.  From the website you can show your support for the Standard by adding your name to the list of Canadians who are calling on Parliamentarians to ensure that federal policies for permitting physician-assisted death under the Criminal Code incorporate the VPS safeguards. At the website, there are also a number of resources that you can use to become more informed about the issue and tools that you can use in your own advocacy activities.  For example, there is a sample that individuals can use as a guide when writing to their Member of Parliament about the need for safeguards.

Sample Letter for MPs

[date]

Member of Parliament
House of Commons
Ottawa, Ontario
Canada  K1A 0A6

Dear:

I’m writing to urge you to incorporate the vulnerable person standard in any legislation governing medical aid in dying.

In the Carter decision, the Supreme Court expressed deep concern about protecting the lives of “persons who may be vulnerable to inducement to commit suicide in a time of weakness.”  This statement does not set apart a particular group of people.  Rather it signals a set of circumstances that can befall any person, which would render them vulnerable to social, medical, psychological, or economic pressure to request assisted suicide even if that is not the best solution for that person.

The Vulnerable Persons Standard is a series of procedures to identify those circumstances so that they are not the impetus for requesting medical assistance in dying. This would require efforts to offer other solutions that address these vulnerabilities, to seek to put the vulnerable person back on an equal footing with others who have more resiliency.  These measures include:

Requiring a vulnerability assessment to determine what social, medical or psychological factors may be putting pressure on the person to request assisted suicide/euthanasia.
Requiring a detailed analysis of voluntary, informed consent
Requiring before-the-fact arm’s length approval by a judge or administrative tribunal;
Ensuring that communication accessibility (neutral and qualified interpreters) will be provided.

A copy of the vulnerable person standard is attached to this letter.

The Vulnerable Persons Standard is an invaluable analysis for persons with disabilities, who experience higher rates of poverty, isolation and discrimination which can compromise their resilience.  The Standard provides important procedural and substantive safeguards to ensure that Canadians requesting assistance from physicians to end their lives are not vulnerable to inducement and will not jeopardize their lives because they are persons who may be subject to coercion and abuse. I’m hoping you will act to ensure that federal legislation regulating physician-assisted death incorporate these safeguards.

Thank you very much for your consideration.

Sincerely,

Toujours Vivant-Not Dead Yet Weekly On-line Discussions about Ending of Life Issues

If you are looking for an on-line forum where ending of life issues are discussed from a disability rights perspective, tune in to Toujours Vivant-Not Dead Yet's (TV-NDY) weekly webcast.

Toujours Vivant-Not Dead Yet is a non-religious organization by and for people with disabilities.  Its goal is to inform, unify and give voice to the disability rights opposition to assisted suicide, euthanasia, and other ending-of-life practices that discriminate against people with disabilities

Amy Hasbrouck, TV-NDY spokesperson, presents a weekly online discussion in English every Friday at 3 p.m. to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community. Watch TV-NDY 's  facebook page or follow TV-NDY on Twitter for the link to join the webcast.

For more information on the TV-NDY webcast go to:  
• Facebook.com/toujoursvivantnotdeadyet
• Web site – http://tvndy.ca
• Email – info@tv-ndy.ca
• Twitter – @tvndy.